Since Parkinson’s currently has no cure, there is a huge reliance on hope in the community among patients and caretakers. Everyone seems to be waiting for that moment when the front page of the New York Times reads “Parkinson’s Cure Discovered!” in huge letters. I can safely speak for the entire Parkinson’s community when I say we are anxiously waiting for that day. But until that day arrives, what is it we actually hope for? What does hope look like for someone diagnosed with Parkinson’s a decade ago, or even just a month ago? Hope could mean different things to different people. Ultimately, I think hope means hoping to have a good life without Parksinon’s interfering too much. Here are some things to hope for as People With Parkinson’s.
Hope for a cure
Of course, first and foremost, we’re looking for a cure. A cure could mean different things, however. When we think of a cure for Parkinson’s, we might think it’s a single pill we take that magically gets rid of the symptoms. A cure might also mean some kind of brain surgery where something is implanted and BOOM, you’re cured. What does it even mean to be cured? Since Parkinson’s is difficult to diagnose in the positive, to begin with, it would be extremely difficult to diagnose it in the negative. Could a drug we take daily for the rest of our lives that minimize symptoms and makes us feel like we did pre-Parkinson’s? When we in the Parkinson’s community talk about a cure, we’re talking about a long-lasting, disease-modifying solution. I think that if most people saw me now after Deep Brain Stimulation surgery, they would not suspect I have Parkinson’s. However, turn off my stimulator and BOOM, I have Parkinson’s again. DBS is not a cure.
Hope for an almost-cure
Many people in the Parkinsons’ community would be happy with an almost cure. I had particularly great results with Deep Brain Stimulation, which I would see as an almost-cure – it’s something that needs to keep working for us to feel relief from symptoms. If I turn it off, it stops working. I feel that the pharmaceutical industry might be satisfied to find a drug that people take their entire lives to minimize symptoms. This helps them have recurring revenue – each month you must refill your prescription and they get paid. There is a reason to hope for this as a potential solution. Drug companies are experimenting with already-approved drugs that can be used off label to treat Parkinson’s. These drugs might already be used for cancer or diabetes, and so they may already be approved by the FDA, meaning drug companies can skip the early-stage trials and move straight to trials that test for effectiveness.
Hope for symptom relief
If we can’t have a cure or an almost-cure, many would at least hope for something new that allows for symptom relief. New drugs are being developed all the time, and many of them offer new ways to take existing drugs, meaning more instant relief and fewer side effects. The gold standard, carbidopa/levodopa has been reformulated many times into fast-acting versions, slow-drip versions that last all day, and more. There is also new research that suggests exercise is even better for Parkinson’s than previously thought. People With Parkinson’s are often advised to increase exercise since this will likely slow down the disease, and reduce symptoms over the long run. There is also new research being done with natural remedies like CBD oil that offers some promise. This is good advice and a reason to feel hopeful!
Keeping hoping, keep learning, keep pushing
One thing is certainly true with this disease – the moment you give up hope, that’s when you’re done for. Never stop hoping that a cure could be just around the corner (it might be!), never stop learning about new therapies, and new things in the world of Parkinson’s, generally. Also never stop pushing yourself, your doctor, others with the disease. We’re all in this fight together and the more we push each other, the quicker we’ll come up with a permanent solution to Parkinson’s.
Don’t stop hoping!
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.